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About Me

I am 37 and a teacher. I am a happily married man with 2 boys aged 13 and 10, and we live by the sea. I have had UC since about the age of 30. These are the ramblings of man trying to come to terms and deal with a chronic disease whilst maintaining some sort of normality.

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Monday, 31 August 2009

It has been my intention over these weeks to lower my pred dose, and thus prove to my consultant that I can conquer this silly disease without his nasty drugs. Yes, I'll have tapered much more slowly than he told me and had to beg, borrow or steal extra steroids to get there, but the upshot would be me sitting in front of him grinning and exclaiming: "you can stuff your speculative mouse-based medicine up your perfectly working backside..." while the UC subsides through clean living and sheer will power.

Of course, the reality is I remain at the same dose: 10/5mgs alternately. I have succesfully talked myself out of lowering it at every opportunity:

"Nah, I won't lower it this week, it's the start of the summer holiday; don't want to ruin that..."

"Mmmm, I won't lower it this week, we're off on holiday next week: don't want to ruin that..."

"Actually, I'll just leave it a couple more weeks, back to school this week, probably too stressful to go back and lower the preds at the same time..."

Ah, I am a weak minded fool.

Then I got a little nudge in the right direction. Yesterday I encountered an all new steroid side-effect: unstoppable bleeding. And it was the most ridiculous and frustrating affair. I blew my nose and a tiny pinprick of blood appeared on the outside of my right nostril. And grew into a droplet. So I wiped it off. And it grew back. So I wiped it off. And it reappeared. So I held a tissue to it, to staunch the flow. And yet it continued. And consequently I spent about an hour trying to make the tiniest little abrasion halt its flow of blood. Which brought on the biggest bout of roid rage I've had for ages. Ranting and swearing at yourself in the bathroom mirror is far too close to actual insanity. So, time to review the preds again...

Thursday, 27 August 2009

Holiday leads to inertia leads to blogging hiatus. Such is August. My month for tuning out and dropping off.

Fabulous week in southern France was almost totally uninterrupted by the ol' UC. The worst was two days of the most enormous flatulence. Two whole days in which the frequency was only matched by the ferocity. And, sadly, the smell. Not so bad, unless, like I, one of the days is the 12 hour drive from home to rented gite... which you are also sharing with another family. Fortunately they are fully au fait with my damned bowel. Bless 'em. The only other toilet related incident was an enormous flood, when the cistern blocked up one night. First up, I descended the stairs into the darkened, quarry-tiled ground floor to find myself ankle-deep in water! Being british, we embraced the dunkirk spirit and stoically mopped it all up, sealed off the toilet and never spoke of it again... Bloody good show, what?

Having analysed what I ate, I have come to the conclusion that the wind was caused by a bag of nuts and raisins I shared with my lovely wife. A shame, cos I like snacking on those. Another to add to the list (many people have warned me off both nuts and raisins before, but until now I have had no problem). During the worst of the wind - during the first evening of the hol - I very successfully employed the old 'colon massage': lie on your back and, starting from the approximate beginnings of your colon, massage in circular movements, slowly following the path of your colon all the way up and round, until you reach the other side/end. Upon which you travails are greeted with a fruity parp. Lovely. Very satisfying actually.

Since returning I have been summoned to the hospital for a chest x-ray (remarkably rapid) in preperation for the infliximab. I have also recieved an appt date, 10th sept, by which time they want me to have made up my mind. Unfortunately this is unlikely. Or I'm going to say no. For now...

Last week I had a chat with a friend of mine who has crohns . He went on infliximab earlier this year but had a rapid negative reaction - he is asthmatic, so the reaction was not a terrific surprise. Subsequently he has been put on Humira, which is constructed from fully human antibodies, rather than human/mouse (infliximab) and is doing very well. So, there's something else to look into.

Thursday, 6 August 2009

This is genius. I watched the first episode of Jo Brands hospital-set comedy (part of BBC4's Getting Old season). All very amusing, inducing mild chuckles and nods at the moments of realism; a worthy social commentary. Until, that is, I got to this bit:

The first ever mention of my old friend the Bristol Stool Chart on British TV (well in my meagre experience anyway)! The suggestion that it could be expanded to 31 varieties is satire of the sharpest kind...

Tuesday, 4 August 2009

I continue to muse over 'gut feeling'. And this inevitably lead me to google.

Apparently expression of feeling from the gut was common in the Hebrew Bible. Back in those days (and I believe subsequently throughout the Middle Ages - this could be the same time [geographer not historian!]) people believed that certain functions/feelings/ailments/abilities were linked to certain parts of the body: a persons emotional, spiritual and mental attributes were sourced in the bowel (many believed it to be like a 'second' brain - if this is the case then clearly mine needs a strait-jacket, padded cell and packet of crayons...). Thus, in hebrew scripture the bowel is often referred to in abstract relation to the emotional reality. For example:Song of Solomon 5:4

'My beloved put his hand to the latch of the door, and my bowels were moved for him'

Whilst this may appear to be description of a common occurrence in the UC household, in fact what it is describing is the wife's emotional passion for her husband... Now, I looked this up in my trusty Good News Bible (of which we have at least 3!? My only explanation is that these are pretty much used universally in schools, and so, miraculously they find their way into my bag...) and here the passage reads: 'My lover put his hand to the door and I was thrilled that he was near'. Obviously the relationship between bowels and passion was much more agreeable in the times of Hebrew scripture.

Following some further links lead me to discover more contemporary writings on the so-called 'second brain', or Enteric Nervous System (ENS) to give it a feasible-sounding name. This, apparently 'independent' neural system is capable of learning (mine has been regressing, kept back in primary school), remembering (Ha! remembering how to make my life shit) and emoting (mainly anger then) according to writing by such eminent people as: Sarah Blakslee (NY Times writer, who publishes regularly on science!?) and Dr Michael Gershon in his 1998 book 'The Second Brain' (it exists, I found it on Amazon and was highly amused by the single, tragic comment...). The work of both these people suggests understanding of the 'second brain' will enable you to journey the path to cure all bowel ailments. Charlatans! That's what I say anyway.

Perusing all this nonesense lead me to note another name that rears it's head frequently: Dr. Jordan Rubin. Now this guy claims to have fought back from death due to Crohns disease, and then uses this fact as accreditation for his own miracle diet/cure for all things bowel (including crohns and UC) - he has even found the same biblical quotes as me! Now, Jordan having been failed by conventional medicine set off on a new path to recovery:

Fortunately, Jordan and his family were determined and sought more than 70 alternative nutritional therapies throughout the world after conventional medicine and numerous hospitalizations failed. His quest for answers concluded with a visit to a California nutritionist who simply told him he was not healthy because he was not following God’s plan. http://www.jordanrubin.com/Of course! God's Plan! Anyway, it worked for him (read the inspiring story at the web address above) and subsequently he has been able to write several best selling books based on his diet (that also interestingly stresses the importance of supplements that you can helpfully buy from his company), read several of his blogs, see him on TV and even listen to him speak live... My gut feeling here is that there is a moral question to be answered by people like Dr Rubin (incidently, although he is often referred to as 'Dr' online, he is not on his website, and I cannot find any evidence of what he is a 'doctor' of).

So, what do I conclude from all of this?

Despite suggestion to the contrary, the gut cannot be trusted as a decision maker. Especially not mine.

The origins of the term 'gut feeling' date back to biblical times, but really its use is indicative of emotion rather than cognition. The only feeling that stirs up my gut is anxiety.

There are plenty of people out there willing to make a fast buck out of the chronically ill with, in my opinion, no more than a dubious basis for their affirmations.

People who write about the 'second brain' struggle to soundly argue its existence scientifically.

If it's miracle cures you're after I prefer the sound of these two chaps found by Martin over at Number Twos.

MOST IMPORTANTLY OF ALL: I STILL CANNOT MAKE UP MY MIND ABOUT INFLIXIMAB...